End of treatment: Information for teenagers with Hodgkin lymphoma

At the end of your final chemotherapy cycle you will have an end of treatment MRI or PET scan and echo heart scan. These scans will provide a baseline for all future scans during your follow-up. 

Once your treatment is over and we cannot see any signs of cancer on your scans, it means you are in remission. You will have regular check-ups with your hospital doctor over the next five years; this is called follow-up. It’s important to attend these appointments even if they make you anxious. Check-ups are a chance for you to talk to your doctor about any worries you might have. As long as you are well, your visits will become less frequent and the risk of relapse will decrease with time. 

You will also have regular scans. You can see your follow-up timetable below:

Please note:
The Imaging Department will schedule your MRI scans and send you a letter with the time, date and location. If you haven't received an MRI date or if your clinic appointment is scheduled for before the MRI scan, please contact us on 07534 324591 so we can rearrange.

If you haven't done so already, please register with our patient app MyCare UCLH. You can use MyCare on your mobile, tablet or computer to view your appointments, blood test results and clinic letters. If you need help to register, please contact us on 07534 324591.

We would like you to continue taking your co-trimoxazole (Septrin®) for three months after finishing chemotherapy or radiotherapy. This is because it can take several months for your immune system to get back to normal following treatment. If you are on any other medicines, please continue to take them unless you are advised otherwise.

Your PICC (peripherally inserted central catheter) will usually be taken out after your final intravenous chemotherapy. It’s very easy to remove a PICC and a nurse can do this quickly in Daycare. 

You will continue to have regular blood tests until the end of your chemotherapy cycle. 

Once your treatment has finished and your blood counts are normal, you will no longer need to have regular bloods tests. If you have had radiotherapy, we will do a blood test to check your thyroid function every year. Your consultant will request any blood tests you need during you follow-up clinic appointments. 

We will offer you an end of treatment appointment with a clinical nurse specialist (CNS) in the first two to six months after completing treatment. This appointment is optional and in addition to your consultant clinics. The aim is to see how you are doing and whether you need support in areas such as lifestyle, education, friendships or home life. If you do not wish to attend this appointment, please let our team know when they call you to arrange it. 

Chemotherapy will affect your immune system and the efficiency of your childhood vaccines. For this reason you should have boosters of your vaccinations three to six months after you finish your treatment. We will write to your GP to let them know which boosters you need so please contact your GP to make an appointment for this. 

We also recommend the flu vaccine for the first winter after your treatment finishes. We will explain this in clinic. 

Once you have completed treatment, you are free to travel abroad. But in the first six months of finishing treatment you should avoid travelling to countries for which you need ‘live’ vaccines. This is because your immune system will need this time to fully recover. 

Your appetite should return to normal once treatment is finished. The puffiness caused by steroids can take a few months to go down. Eating a healthy, balanced diet is an important part of your recovery and we don’t recommend dieting. 

Your hair may have already started growing back during the gentler cycles of chemotherapy. If it hasn’t yet, it will begin to grow again once chemotherapy is completed. Hair sometimes grows back slightly different than before and can take a while to thicken up. For example, some people notice their hair is a slightly different colour or more curly after treatment. 

Eyelashes and eyebrows, which might have become thinner during treatment, should return to normal. Fingernails and toenails will become stronger again and any lines across the nail bed will grow out.

Your periods may have become irregular or they may have stopped temporarily during treatment. Your menstrual cycles should return when you finish your treatment. But it can take a few months to get back to a normal pattern. You may continue to experience hot flushes for several months after your final dose of triptorelin or leuprorelin. This will get better once your hormone levels normalise.

It is common to feel tired after finishing treatment and it can take a while to build up your stamina. You can help yourself by eating a balanced diet, drinking enough fluids and introducing activities gradually. Fatigue at school and when studying for exams is common and will take a while to overcome. Remember to pace yourself. You can ask for a phased return to school or college which can help with building up your tolerance for activity. Speak to our occupational therapy team if you need support with your fatigue.

Physical activity is important for improving general strength after treatment. It can reduce stress, improve mental wellbeing, and boost your self-confidence. Regular exercise can also reduce lethargy and tiredness. When restarting physical activity, do it gradually to avoid ‘boom and bust cycles’. This is when you overdo an activity on a day you have lots of energy, and need to rest more the next day. Speak to our physiotherapy team who can help you work out an exercise programme that is right for you. The MOVE Charity website also has some helpful advice about getting more active: movecharity.org 

Many young people are worried about going back to school after treatment is complete but after a few weeks they feel like they’ve never been away. Schools and colleges can organise extra help if you need it or if you are worried that there are gaps in your knowledge or education. Remember to be open and honest with your parents, teachers and friends. They are there to help you as much as you will let them. You can also arrange to meet up with friends before returning to school, especially if you haven’t seen them in a while. 

You may be entitled to extra time, rest breaks and special consideration for exams due to your treatment and the amount of education you have missed. Please speak to your school or college about how to apply for this from the Exam Board. Your CNS can also write a letter to the Exam Board. 

It is common to worry about getting coughs and colds after treatment. But once your blood counts get back to normal, your immune system should hopefully be able to fight off infections with time and rest. If you are worried when you are unwell, contact your GP and they can advise if you should go to hospital. 

It’s important that you let us know if you come into contact with someone with measles or chicken pox in the first six months after finishing treatment. 

You may be tempted to feel for lumps or bumps after treatment has finished but try not to. Feeling for lumps can cause a lot of stress and become a habit. Generally it’s best to let your doctor check you during your regular check-ups in clinic. 

Remember that it’s normal for lumps to come up after treatment, particularly if you have a cold or throat infection. It doesn’t necessarily mean that the cancer is coming back. 

A lump smaller than the size of a pea is usually ok. If it gets bigger, changes shape or gets harder, please let your CNS know. They can advise you if they need to see you in clinic sooner. 

If you took part in a clinical trial during your treatment, you can contact the trials team directly at uclh.cctupaedstya@nhs.net. Please note that it often takes several years for the results of a trial to be known. 

The treatment for Hodgkin lymphoma is not thought to affect fertility. There is also strong evidence that: 

• it doesn’t increase the risk of birth defects 
• babies born to people who have had lymphoma have no increased risk of developing lymphoma themselves. 

Many women conceive after having lymphoma without difficulty. But we suggest that you wait two years after completing treatment to give your body time to recover. 

Men who have had chemotherapy may take some time to recover their sperm count. This can sometimes take a year or more. We advise that you wait 12 months after completing chemotherapy before fathering a child. If your fertility is reduced and you stored sperm before treatment, you can use this to begin a pregnancy when you are ready. 

Please note: Stored sperm is reviewed every 10 years. Speak to the fertility lab directly for more information.

If you need a blood transfusion in the future, you will need to have irradiated blood. This is blood that has been treated with radiation to prevent transfusion-associated graft-versus-host disease. If you have a blood transfusion at UCLH, we will have information about this in our hospital records. But healthcare professionals in other hospitals will not know this so it’s very important that you tell them. 

People who have had a blood cancer such as lymphoma can’t donate blood, blood products or organs in the future. This follows the current rules about organ and blood donation. 

Cancer treatment can sometimes damage healthy cells while destroying cancer cells. This damage can develop months or years after treatment. We refer to this as ‘late effects of cancer treatment’. These late effects are rare and include heart disease or second cancers. But detecting them as early as possible can make them easier to treat. You will transition to a Late Effects Service five years after your treatment has finished. This is to make sure that you are monitored for any problems in the future. 

During treatment, you and your family were likely focused on the day-to-day juggling of treatment with school, work and life in general. Now that treatment is finished or coming to an end you may feel a mixture of emotions as you begin to come to terms with the experience you have had. There is no normal or right way to feel now. However you are feeling is right of you. 

Many young people report a mixture of feelings:

• Relief and happiness – that treatment is coming to an end and life can move forward. 
• Shock and anger – it’s normal to start processing the shock and reality of what has happened. You may feel angry about what you have been through and wonder why you? Or you may feel frustrated about how your life has changed. 
• Worries about cancer returning – even if you have been cured with your first line of treatment, it’s only natural to worry about your cancer coming back. This uncertainty can be difficult to deal with and lots of young people report feeling anxious when waiting for follow-up appointments. Talk to your doctor about these worries if you feel like they are taking over your life. Remember that the risk of the lymphoma coming back gets smaller with time. And if it does come back, we can offer you very good second line treatment. 
• Irritability and isolation – you might feel that people around you don’t really understand what you’ve been through. You might get irritated and find yourself snapping at things that normally wouldn’t bother you. 
• Loss of confidence – some people may not feel confident about getting back to normal activities. Or they may feel self-conscious about physical changes such as hair loss. Others feel vulnerable because they’ve lost confidence in their body or their health, or no longer trust that ‘everything will be ok’. This loss of confidence is natural and will take some time to build up again. 
• Sadness and depression – it’s natural to feel low at times and to be upset about what has happened to you. Sadness is a very normal emotion that everyone feels from time to time. However, if this feeling lasts more than a couple of weeks or is interfering with your day-to-day life, speak to your GP, CNS or hospital doctor. 
• Guilt – some people feel guilty about feeling down or finding their treatment difficult because they think they should feel lucky they survived. Hodgkin lymphoma treatment is tough, and you have done brilliantly to get through it. All chemotherapy treatment for any cancer disrupts life and it is ok to feel upset about that disruption. All of your feelings are valid and justified. 

Don't forget that even though you have completed treatment we are still your team! If you have any questions or worries, please call your CNS to talk through them.

• Be honest with yourself and those around you about how you’re feeling. There’ll be good days and some bad days ahead. Recognising how you’re feeling instead of burying those feelings is important. 
• Talk about your worries and fears. Sometimes you can do this with family and friends. But if you find it hard to talk about your emotions with people close to you, your GP, CNS or hospital doctor can refer you to see a counsellor. 
• Write things down. When thoughts or worries spin around in your head it can be therapeutic to write them down. This can help you to make sense of them and to feel more in control. You could keep a diary or journal. Or you may choose to share your writing with other people so you don’t have to explain how you feel over and over. Some people also find it helpful to make a list of their worries and then think about what they can do about each of them. 
• Peer support. There are lots of support groups and online groups for young people who have or have had cancer. Being able to talk to people who have been through similar experiences can be helpful. 
• Refocus your energy. Some young people have found that focusing on exercise, sport or a new hobby can help when they start worrying a lot. 
• Reconnect with friends. A lot of people want to be a good friend but are not sure how they can help. Try reaching out to friends and let them know what you need from them. 
• Set achievable goals for the future. 
• Make plans. Put things in the diary that you can look forward to. 

Children’s Cancer and Leukaemia Group: cclg.org.uk 

Teenage Cancer Trust: teenagecancertrust.org 

Blood Cancer UK: bloodcancer.org.uk 

Macmillan Cancer Support: macmillan.org.uk 

Young Lives vs Cancer: younglivesvscancer.org.uk 

Trekstock: trekstock.com

Children and Young People's Cancer Services

University College Hospital Macmillan Cancer Centre

Huntley street, London, WC1E 6AG

Clinical nurse specialists (CNSs): 07508 628 728 (Monday to Friday, 9am to 5pm)